Tag: mutation

I feel like I’ve heard this phrase, or a version of it, way too much in my life… “I’m so sorry, Ms. Lewis…” “I hate to be the one to tell you this, Ms. Lewis…” “I have some not so great news, Ms. Lewis…”

Life is so full of ebbs and flows. Mine is full of skyrockets and nose dives. This completely bipolar life of mine.

I’m writing this on August 13th, one week post-surgery, the same day I posted my last HI-larious tale about the things you really should know before having a double mastectomy. As I was putting the finishing touches on that last post, I was headed to see my breast surgeon, Dr. B, for my first out of the hospital follow-up visit. Based on how my visit with the plastic surgeon went earlier in the week, I expected to go in and out… I’d have one drain removed and planned to ask for gene testing, something that was offered to me back in June. My doctor and I agree that this isn’t about gene testing for the BRCA mutation, the notorious breast cancer gene. We’re both quite confident my breast cancer has nothing to do with BRCA. The truth is, nobody knows why I had Hodgkin’s Disease when I was 16, and I’m hoping if I get the gene testing, cancer research one day will be advanced enough that I’ll have some answers. If not for myself, then for my family, my siblings, my future children. I’m actually confident this is true. I’ll never stop searching for answers.

But that’s not exactly how my August 13th visit went.

Dr. B took me right in, she checked out my new boobs, she took one drain out, and then she asked me to dress and come to her office… that’s the sign, people. If ever you need to be prepared, when a doctor says, “Let’s talk in my office,” it’s usually not good news.

Dr. B didn’t bother to hesitate: “I hate that I’m always the bearer of bad news.” And my poor, unbelievable mother… her breathing. Trying so hard to be strong for me. Wanting this to be her, and not me.

It turns out the pathology of my breast tissue from the mastectomy showed that, even though all of my breast tissue is now gone, the cancer that was in it was in fact invasive. DCIS, which was my initial diagnosis based on my biopsy, is typically contained in the duct. There was a chance, and I was warned that this was low, that some microscopic cells could have floated outside of the duct… in translation, invading the tissue. Well, that low chance happened. Of course it did.

My doctors are doing additional tests, an Oncotype DX test to be specific, to determine the potential risk of my estrogen-receptor-positive breast cancer coming back (recurrence). This will also give the doctors and I a sense of which treatment I’ll benefit from… hormone therapy, or hormone therapy plus chemotherapy. You can read all about how that test works and what it might tell me by clicking the hyperlink above.

And yes, you read that right… I may need chemo again.

If you ask me, I’m SURE I’ll need chemo again. That’s just how my life works. This link is giving me some hope, given the small size of my tumor (roughly 9 millimeters). Also, a sentinel node biopsy during my mastectomy came back fine, a good sign. No lymph nodes were removed during my mastectomy. I’m still preparing for the worst, because I have to.

As I learn more about this Oncotype DX test, I have to laugh, because there is a scoring mechanism that helps determine risk. Basically, if you score 18 or lower, you just need hormone therapy. Anything higher than 18 means chemo should be considered. The number 18 has been a significant number throughout my life. It’s my lucky number, it’s a number that pops up in so many things that I do… no doubt a sign from the universe… I’m going off on a tangent, but I never fail to see the irony.

There are no coincidences in this life. You gotta watch for the signs… life is so weird like that.

The results of the Oncotype DX test won’t come back for a couple of weeks. In the meantime, I’ll be searching for the best oncologist and making additional plans that I was not prepared to have to make. I’m sure I’ll also be on the phone with my insurance carrier to argue with them about covering the cost of this test, which is several thousand dollars. This crazy circular life of mine… I’m in a constant state of deja vu, and not in the awesomeness that is Beyonce way (I couldn’t end my day without praising the queen… “don’t worry, be yonce”).

I’m encouraged that my breast cancer seems to be very treatable and survivable. Research shows a 5-year survival rate of roughly 98%, which is higher than what my Hodgkin’s was back in 1998 (I recall at the time, survival was 80%). This is GREAT news. I should be thrilled. Today, I’m just not. I’m fucking pissed.

Livid does nothing to describe my mood right now. But earlier I was just sad. I’m still so sad. I’m sad I have to deal with this nonsense, again. I’m crushed my mother has to watch me deal with this nonsense again. Her baby, her only daughter that she tried one last time to have and kept a secret for months from everyone, even my dad. My mother who told me on June 1 that she knew the day would come where the doctor would tell me, you have breast cancer. And she kept that to herself too, for 17 years, to spare my heartache and sanity, and told me how relieved she was that the day had finally come where we could just deal with it and move on, never worry about cancer again.

She carried it, and made sure I never had to.

And now that I have to, she’s broken for her equally broken daughter. What the fuck would I do without this remarkable woman? I always have to go back to how unbelievably blessed I am to have her here, making brilliant decisions and teaching me to do the same. She’s my rock. She’s the reason I came into the world and why I’m still alive today. There are no coincidences in this life.

Tonight was the first time breast cancer ever made me feel empty. I knew I had to have a mastectomy, but I never felt sick. I wrote about how terrified I was to wake up feeling this emptiness, this concavity. I was relieved that I woke up from surgery to a whole lot of pain and pressure in my chest, because pain you feel. I’m wondering if that’s the reason I’ve recovered so quickly, pain feels real to me. Tonight, as I type this through my speedy recovery from surgery, there’s really not much physical pain left at all… I’ve mostly weaned off of narcotic pain killers, a huge feat in such a short time-frame. There’s just numbness, and weird sensations in the skin covering my expanders and in the nipples I so desperately wanted to save. It doesn’t feel good at all. It makes me want to jump out of my skin. All I want to do is fall asleep lying on my side, snuggled up to my little baby boy Sullivan. He’s been with me all night.

I didn’t tell many people today (Aug. 13th), but I hand-picked the few who I’ve worked with in the past that can help me find the best oncologist and treatment, for me. I knew all of these years working in pharmaceuticals would one day come back to repay me. I have a team of badass bitches like myself already making moves and have names of 5 star doctors in my area. And you know why? Because as Tiny Fey would say, “Bitches get stuff done.” And the only thing I can do right now is use all of my fucking anger to absolutely demolish cancer. Dude, I am so much tougher than you.

I went for a walk down by the beach tonight with my best friend Laura. When I got out of the car, a man on the boardwalk said, “You just missed it. It’s gone.” He was referring to the sunset.

He was wrong. There was still so much color left in that sky.

“The Bluff” Kings Park, NY Aug. 13, 2015

And there’s still so much more fight left in me. I have to laugh that cancer actually thinks for one second I’m not going to ruin its life before it ruins mine.

Bring it the fuck on, cancer. You must have forgotten that I’ve done this before. I will OWN YOU.

You think you’re gonna stop me from living the life I’ve worked hard for and deserve? I’m off to the Hamptons with my best friends Cathy and Lacey to prove your stupid ass wrong.

Cancer, have yourself a nice little weekend. You best get ready for Monday, because shit’s going down.